If you have taken Xofigo (Radium-223) will you please share with me what other treatments, if any, you also took simultaneously with the Xofigo. Please include treatments like traditional hormone therapy as well as any of the newer drugs or chemotherapy.
Thanks
Joel
Joel: I am getting Zolodex injections. Zometa has now been switched to Xgeva injections (2). My treatments from the beginning 6/2013 have been: Lupron injections from the urologist initially and I had 2 or 3 injections; then I went to see a radiation oncologist who radiated my L3 first and then my prostate (44 treatments) while still getting Zolodex, and Zometa treatments. I have also had 6 rounds of Taxotere. Was going to have Provenge but never did because by the time this was going to happen something had changed and I could not have the Provenge. Then I was taking Xtandi for about 1 month.Had surgery on L3 to remove tumor due to spinal cord compression. Then I switched to a different doctor and had two rounds of Taxotere and Carboplatin chemo while also taking Emcyt, Leukine Leukine injections, Metformin, Fondaparineuax injections and other stuff I don't even remember. After developing a G.I. Bleed decided to go back to original onc and resumed treatment with Zolodex, Zometa. Original onc decided to try Jevtana chemo which I had two rounds and it was working but I developed neutropenic fever and was in the hospital for 12 days. The antibiotic slam that was given to me left me in really bad shape and I am just now getting to feel better yet my strength has depleted. Doc put me on megastrol while he was on vacation for 3 weeks. I am currently in the hospital in the rehab trying to gain some strength back and just this last Friday I started taking Zytiga. My onc also wants to put me on Xofigo, yet the rehab unit is not cooperating and I don't think I will be getting Xofigo until I am released from rehab. That is my journey in a nutshell Joel. Why do you ask? I am curious.
Jon
Hi John,
I have heard from a few people off line that their doctors have not given them any other treatment while they were taking Xofigo. Xofigo should be given along with the standard of care, or in combination. I am trying to see if this issue is just specific to a few individuals or if it is a common problem. If it is common I want to make some sort of educational piece on the blog for men who are going to start Xofigo.
Joel
Joel,
I took Xofigo from 12/14 to 5/15. During that time I also took all of the Dr. Myers regimen of Lupron injections, Zytiga, Prednisone, Metformin, Avodart, and Crestor along with many supplements.
Dr. Myers did not want me to take Xgeva or Leukine (an immune system stimulant) during Xofigo treatments. And he did not want me to take these supplements...green tea extract, curcumin/turmeric, resveratrol, pomegranite, and indole 3-carbinol during Xofigo.
His philosophy was that you do not want to suppress the PC in your bone mets when taking Xofigo. You want the cancer to present itself so the Xofigo will counter it.
Half of my bone mets (3 of 6) disappeared after Xofigo. The treatments are painless with just a few mild side effects that seem insignificant after a few years on HRT.
Best of luck to you...Bob
Bob, Thank you for sharing the information.
It is interesting and makes a lot of sense not to take the supplements during Xofigo both for the reasons you cited and you don't want to strengthen the cancer cells so they might be able to fight harder against the treatment. This is similar to the reason you should not take them during standard radiotherapy.
Joel
Yes there was something about no green tea during treatment. My hubby doesn’t take a lot of other supplements.
My husband has received 3 treatments of oxfigo (radium 223) & remained on his treatment of eligard monthly - zometa ( monthly) & Zitiga & prednisone daily. He is 82 & began with stage 4/Gleason 9 on lymph nodes/seminal vessel/& neck of bladder (5 years this may) 10 radiation treatments to sacrum & pelvic aera & 12 radiation to left femur. He has had NO symptoms from . -oxfigo except fatigue. We are greatly blessed & thankful. He had radical prostectomy in May of 2012. The oxfigo is a blessing rather than chemo at this stage of his cancer.
He also takes a weekly injection methotrexate for Rheumatoid arthritis. Wonder if this is a help in treating the bone csncer as methotrexate is used for bone cancer? Just a thought!?
I
Glad that he is doing so well.
FYI- Prostate cancer that has moved to the bone is not bone cancer, it is metastatic prostate cancer. Also, recent studies have shown that zometa need not be taken that often .
Methotraxate is enhanced by adding Metformin which is cheap and also might be helpful in Prostate Cancer control.
Joel
Hi Joel,
My situation is that Zytiga just failed after almost 3 years, & I'll be discussing the order of treatments with a urologic oncologist tomorrow & my med onc the next day. Is there a difference between "along with the SOC" & "in combination." Are you saying that Xofigo should always be given contemporaneously with another drug? For instance, if I take Provenge next & then Xofigo, I should also start Xtandi without waiting to finish Xofigo? Do you happen to have a reference for that? I may need one! Thank you very much!
Neal
A blog on xofigo is great idea. My husband did it pretty early after it came out. We were amazed that all of the literature was - hey no real side effects. And nuke-Med docs were same. It hit my husband harder than chemo in blood values. He stopped at 4.
We do think it helped against scattered bone mets.
But more real info needs to be out there about this drug.
Also - he did not stop any regular treatments (Lupron Xgeva not sure if he was on Xtandj yet) In fact he got 5 refractions on his spine during same time.
There is a new study out about Zytiga and Xofigo being a bad combination. That seems to be valid. Maybe there’s an over-reaction to not do any other treatment?
I finished about 6 weeks ago a 6 month course of monthly Radium 223. I continued to receive my 3 monthly Zoladex injections coupled with 4 daily Abiraterone tabs and 5mg Prednisone. I also take daily aspirin and statins. Interestingly I continued also with supplements such as pomegranate juice, green tea, Pomi-t, Cod liver capsules, Brocco max, Ginger root extract and Garlic extract as I was not advised otherwise as Bob was and you seem to think was more sensible. I accept some of your rationale, but my view would be that the cancer should be attacked simultaneously with a full arsenal of every weapon we have. It should be shot, stabbed, poisoned, strangled, drowned, etc etc all at the same time to reduce it's ability to "learn a new defence". My PSA has dropped from 3.6 before the Xofigo to 2.9 a week ago. The only significant Blood test change was the appearance of 0.06 nucleated red blood cells in the 5th month and at the last test this had returned practically to normal at 0.01. I have no untoward side effects and am virtually pain free with full physical abilities, indeed I exercise about two hours daily.
Originally on diagnosis (2½ years ago, when my PSA was 620), my metastases were far to numerous and widespread to attempt to count (only in bones) and before Xofigo had dropped 40 to 60% with the androgen deprivation therapy and my dietary changes.
I am seeing my oncologist on the 23rd and I expect he will arrange a new scan, when hopefully a new reduction will be evident.
Niall
I have received all treatments serially, except for Lupron and Zometa, which I have received throughout: Zytiga, taxotere, Xofigo and Xtandi. The subject of combining drugs hasn't come up but I am certainly going to raise the issue because my PSA is doubling each month and the number of mets doubles every two months.
Last year, I took Xofigo along with Xtandi, Lupron, and Xgeva. I have yet to have the common chemo treatment of Taxotere. The Xtandi, Xofigo, and now Zytiga has all been given prior to it so I feel I am a bit different due to how I have been treated. When I started Xofigo. I was on a Fentanyl 25mcg patch. Xofigo was the first chemo that made me feel uncomfortable to take but I went with it anyway. My first four doses were mostly uneventful except I was more tired and my pain level rose. This really concerned me as I had expected it to reduce my pain level, not increase it. I finally got to taking Fentanyl 75 mcg patches with two 15 mg oxycodone for breakthrough pain.
The last two doses caused me severe nausea and I lost my appetite which has not returned. My weight went from the 207 lb when I started down to the 155 lb I weigh today.
I must say though that between the Xtandi and Xofigo, my bone mets remained stable. I experienced a full year on no growth. After my last dose in Sept 2015, my PSA started to slowly climb. It went from 2.3 to 7.05. I know for many men, they would consider these levels quite low but my cancer does not need a high number to spread. Indeed, the scan I had in May showed two new areas of bone mets. So now I am on Zytiga with Prednisone. I cannot tell you if the Zytiga has been effective as I have been on a extended vacation since starting it. The side effects I have experienced with Zytiga is mental confusion, more tiredness, and some depression. Being bi-polar, I already take medication for depression so I just try to keep a close eye on how I feel and if I think it is getting really bad, I will contact my Psych.
Was Xofigo worth taking? I cannot honestly give you a good answer. Was it instrumental in holding my cancer in check? Maybe. It definitely did not stop my pain. And the lose of appetite continues to be a problem. All I can say is if I was asked to do it again I probably would.
During the Xofigo treatment I was also on Zytiga, Trelstar, Progesterone, Metformin and Proscar. The Xofigo did have a positive effect on the pain and I experienced minimal side effects. I'm also taking a large assortment of supplements including LDN.
Regards,
John
Hi Joel. I have my third Xofigo treatment in the beginning of April. The doc has started a monthly Xgeva shot. I'm also taking Lupron every three months. I have 4 bone mets in my spine but I'm lucky in that I only have pain from one in my lower spine. So far Naproxen has helped with that.
Previously, I've had a proctectomy, one round of docetaxel, radiation for 2 older bone mets, Provenge, and Xtandi. Xtandi seemed to have no effect so I was taken off it. I't hard to say if Provenge had any effect.
I was surprised with the side effects I'm having. I get nauseous and very tired for about a week after the injection. I didn't expect that.
I've also read that for maximum effectiveness you need to get at least 5 doses of Xofigo, so I'm going to hang in there and get all 6.
Medicare will currently pay for only one course of Xofigo. My onc says that the manufacturer may petition the FDA to allow multiple courses of treatment later in the year. Something to keep an eye on.
I have completed the 5th injection of Xofigo. I have been on Xtandi for 1 year. I receive Xgeva monthly and Lupron quarterly. Also take calcium citrate (2000 mg) daily. Bone scan scheduled for three months later. PSA is 21.4; down from a high of 165. Anxious to see what is next on this journey. Except for back lumbar pain and some fatigue, I am able to work on my ranch. Only real complaint is loss of muscle tone which makes my work more difficult. Began treatment in 2011 with surgery followed by IMRT (43) Lupron, Bicalutamide and Provenge in 2018.
Your Xofigo Experience 
PSA spike while on Xofigo
Approved for Xofigo
just finished ext beam radiation to spine now on xofigo
Anyone w Xofigo experience?
